Ideally, children should transition to adult-oriented health care between the ages of 18 and 21 years. The American Academy of Pediatrics published a consensus report on health care transition in collaboration with the American College of Physicians and the American Academy of Family Physicians. The report states, “The goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth, including those who have special health care needs and those who do not.” The transition planning process begins around age 12-14. As awareness about this important topic increases, more and more primary care offices are developing ways to implement transition to adult care for their pediatric patients. Various tools are available to initiate the discussion and facilitate the transition process.
Got Transition?
Got Transition is part of the Center for Health Care Transition Improvement. Got Transition aims to advance access to effective transition support from pediatric to adult health care for all youth, including those with special needs. The organization is supported by a cooperative agreement between the US Maternal and Child Bureau/HRSA and the The National Alliance to Advance Adolescent Health.
Address: Got Transition? | Center for Health Care Transition Improvement
c/o The National Alliance to Advance Adolescent Health
750 17th Street, NW
Suite 1100
Washington, DC 20006
Phone: (202) 223-1500
Email: info@gottransition.org
Website: www.GotTransition.org
Specific transition support:
Many organizations offer guidance and tools for transitioning from pediatric to adult care in terms of a specific disease or health need.
Epilepsy
American Epilepsy Society:
http://www.aesnhttps://www.aesnet.org/clinical_resources/practice_tools/transition_tools_adolescentset.org/practice/practice-tools/transition-from-pediatric-to-adult-care-tool
Young Epilepsy: A UK based organization with a mission to create better futures for young lives with epilepsy and associated conditions.
http://www.youngepilepsy.org.uk/for-young-people
Diabetes
National Diabetes Education Program:
https://www.niddk.nih.gov/health-information/communication-programs/ndep/health-professionals/practice-transformation-physicians-health-care-teams/diabetes-patient-safety/provider-setting-specific-risks/medical-office
Autism
Autism Speaks:
http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
Sickle Cell Disease
St. Jude Children’s Research Hospital: Their STEP program consists of videos designed as educational modules with interactive pre and post quizzes.
Sickle Cell Transition E-Learning Program (STEP)
http://www.floridahats.org/wp-content/uploads/2010/06/Sickle-Cell-Transition-Curriculum-Final.pdf
Cystic Fibrosis
Nationwide Children’s Hospital: CF Transition Checklists can be downloaded from their site.
https://www.nationwidechildrens.org/specialties/cystic-fibrosis/services-we-offer/transition-program
Congenital Heart Disease
iHeartChange.org: A website for young people with congenital heart disease. Create a free account start filling up your hearts!
https://iheartchange.org
Adult Congenital Heart Association: Includes education materials, clinic directories, and much more.
http://www.achaheart.org
Centers for Disease Control (CDC) Website: Living with a congenital heart defect
http://www.cdc.gov/ncbddd/heartdefects/living.html
Inflammatory Bowel Disease
North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition: A PDF document about transition.
“Transitioning a Patient with IBD from Pediatric to Adult Care”
Survivors of Cancer
National Cancer Institute: Provides general information regarding late effects of treatment for childhood cancer.
http://www.cancer.gov/cancertopics/pdq/treatment/lateeffects/Patient
National Children’s Cancer Society: Beyond the Cure survivorship program.
https://www.thenccs.org/survivorship/